News news and more news

It’s amazing how quickly time is passing now! We are mostly back in a routine. We’ve re-started all her therapies and will re-start school soon and life is just plain busy.

So much has changed since the last update……going to try to keep this short and sweet so I can get in a workout once I sneak out of Maddie’s bed.

Seizures are barely noticeable, if at all during the day. If anything, they’ve improved since the last update and I’m truly not sure if what I’m seeing is seizure activity or just strange movements when excited. We’ll get an EEG fairly soon so then we will know. She still has seizures as she falls asleep on me every night. They are also mild, milder than they were a few weeks ago too.

She is no longer having all the crazy mood swings. She’s her normal happy Maddie with the exception of a few little pinches here and there and some whining when she isn’t getting what she wants. But that’s improving quickly too.

She’s babbling up a storm. Copying tons of what I say, linking sounds together. Much more than ever before. The words aren’t particularly clear…..but that may also be because Maddie also just lost her first two teeth. The first was a couple of weeks ago and the second was tonight. She has been bothered by it being loose and her tongue was constantly playing with that area. So I think the articulation will come, but she has to get used to the new big hole in her bottom teeth first.

We have a few issues still though. Unfortunately her incision has never really healed up the way we hoped. One section had a large scab that just wasn’t going away. So after exchanging emails last week with her surgeon, it was decided that we needed to see a plastic surgeon to clean it up. It actually started having some fresh drainage out of it over the weekend while we were at the beach, so she’s on another course of antibiotics now to help dry it back up.

We saw the plastic surgeon at Duke today and he feels it will heal faster and better if we debride it. The regrowth of her hair into the affected area and the drainage that has reoccurred is causing it to act like a chronic wound that just won’t heal. It’s not infected and is very clean, but the large scab isn’t going anywhere fast unless they manually remove it. So next Friday Maddie will have that done under sedation at Duke, hopefully (if all goes well) as an outpatient procedure.

It’s annoying, but not that serious. And in the scheme of things, it’s an extremely minor secondary issue from the original surgery. So we’ll take care of it and hope that with the intense wound management regimen I’ll have to follow for a few days that it closes up nicely and then we can put it in the rear view mirror.

She’s also lost almost three pounds since surgery. She is eating, but not like before surgery. And she won’t feed herself at all anymore. So that is a work in progress for sure. She was thin to begin with and at 30 lbs at age 6 and a half, we need to rectify this quickly. Her size 2 bathing suit bottom wouldn’t stay up at the beach last weekend.

But that’s really all the hard stuff. There is a lot more great news. At the beach, Maddie could control her own body temperature. For years, we’d had to yank her out of the water if she started to get cold (which happened in 90 degree weather even when she was wet) and wrap her in towels and put on dry long sleeved shirts and long pants to help her get warm again. She often had awful seizures on the beach because of it. She loved the water so much we hated to take it away altogether but we had to be really careful to keep her from getting too cold. And this time we didn’t see any sign of that. She got a bit chilled once but it was legitimately chilly with the wind. And we saw no seizures out there. It us truly amazing what the brain and seizures can do. That type of dysfunction of temperature regulation is called autonomic dysfunction. It’s usually a symptom of underlying neurological conditions. But it seems that this CC surgery, by so greatly reducing the seizures, may have stopped it. Which is pretty amazing.

There are other great things: she’s back sleeping in her bed! I sometimes sleep with her, but hey, I get some time to myself at night now. She can catch a ball. Even while standing! She can run!

So life is good.

Love to everyone,
Liz, Brandon, and Maddie

And I don’t mean to add this as an afterthought, but it doesn’t really “fit” as part of my update…..There has been a lot of press lately for a new treatment for intractable epilepsies. Many of you loyal readers have emailed me about it and for that, I thank you! It is certainly not something I would have thought I would have ever considered for my child, but after the evidence that I have seen and read lately from other families similar to mine, I can now say with certainty that medicinal marijuana looks to be a VERY promising treatment for many of the difficult to treat epilepsies of childhood. It is obviously not legal in the state of North Carolina and, as such, it is not an option for Maddie. While we do not need it right now, there are many children in our state right now who deserve to have it as an option for them without their families having to up and move themselves across the country. I plan to begin advocating for the legalization of medical cannabis in NC for children with medicinally intractable epilepsies. Yes, this will be an uphill battle. But it is a battle worth fighting if it helps children like Maddie. Not everyone can have the surgery that Maddie just had, and many do not have such positive results.

If you would like to see more about it, please watch the CNN documentary “Weed” featuring Dr Sanjay Gupta’s research into medicinal marijuana over the last year.

You can view it by clicking here.  It is truly eye opening.